I have been diagnosed with alopecia

[MrsBugi]

Lots of tears. Lots of confusion. Lots of frustration, shame and embarrassment.

A doctor diagnosed me with diffuse alopecia areata, possibly in the early stages of alopecia totalis. I am in the process of gathering more information about it. It's been a shock and has been challenging to deal with and accept.

Does anyone else have any experience with alopecia or know anyone who has?

 

[ja1484]

Had a friend with it back during my childhood.

For my part, I wouldn't have a particular problem with someone not having a typical head of hair. I understand I might be different from the norm though.

PM to talk? Perhaps try out the ole shaved head look or become a hat aficionado?

 

[sjwaste]

A very low percentage actually progress to alopecia totalis. Wikipedia also tells me that about half of people will regrow their hair in the next year without any treatment at all, and 90% will regrow it all at some point. I guess the only thing to really say is that although on an individual basis, it has the potential to suck, you're not dying and the odds are very good that it will disappear on its own. Better than most diseases, even.

If, however, I have just been taken for an Arrested Development joke, shame on me.

 

[MrsBugi]

Originally posted by: ja1484
Had a friend with it back during my childhood.

For my part, I wouldn't have a particular problem with someone not having a typical head of hair. I understand I might be different from the norm though.

PM to talk? Perhaps try out the ole shaved head look or become a hat aficionado?

If and when the time comes and Toppik (which I have been using to cover scalp patches so far) no longer works, I will shave my head and start wig shopping. Thank you for the support, did your friend's condition improve and if so what did he/she do? I'm still in the denial phase somewhat, I'm hoping there will be some magical cure (my mom insists I rub the bald patches with ginger soaked in brandy) but deep down I know there isn't.

It's really good to hear that you wouldn't have a particular problem with someone not having a "typical" head of hair. I think the social stigma is much more against women with baldness though, with men it's much more understood and accepted. It's defintely a process but luckily the few friends and family members and of course my husband I've disclosed the news to have been supportive.

 

[MrsBugi]

Originally posted by: sjwaste
A very low percentage actually progress to alopecia totalis. Wikipedia also tells me that about half of people will regrow their hair in the next year without any treatment at all, and 90% will regrow it all at some point. I guess the only thing to really say is that although on an individual basis, it has the potential to suck, you're not dying and the odds are very good that it will disappear on its own. Better than most diseases, even.

If, however, I have just been taken for an Arrested Development joke, shame on me.

I wish it were an Arrested Development joke! :brokenheart:

Thank you for the information, I've also read that Wiki entry and the numbers are encouraging. I've been losing patches for the past 2+ years with no regrowth but I still have hope. I'm lucky to be healthy otherwise, this is mostly a cosmetic issue with definite psychological effects in terms of confidence, etc. I've become a big fan of hats lately.

 

[Blieb]

Sorry ... can't really put myself in those shoes, I should be in the laser hair removal line (if not just for my back).

We had a family friend who has totalis. Haven't seen them in maybe 15 years ...

It was a male ... he had a wig and as a kid I never really noticed.

On a woman who has a wig, the only telltale would be eyebrows. Some people butcher them anyways and just pencil them in.

I think you should look at it more as liberation ...

- Never have to shave your legs
- Never have to bikini wax
- Never have to pluck eyebrows
- Never have to pay big bucks for salon highlights and trims
- Never have to worry about that upper lip mustache

 

[MagnusTheBrewer]

Originally posted by: MrsBugi

Originally posted by: ja1484
Had a friend with it back during my childhood.

For my part, I wouldn't have a particular problem with someone not having a typical head of hair. I understand I might be different from the norm though.

PM to talk? Perhaps try out the ole shaved head look or become a hat aficionado?

If and when the time comes and Toppik (which I have been using to cover scalp patches so far) no longer works, I will shave my head and start wig shopping. Thank you for the support, did your friend's condition improve and if so what did he/she do? I'm still in the denial phase somewhat, I'm hoping there will be some magical cure (my mom insists I rub the bald patches with ginger soaked in brandy) but deep down I know there isn't.

It's really good to hear that you wouldn't have a particular problem with someone not having a "typical" head of hair. I think the social stigma is much more against women with baldness though, with men it's much more understood and accepted. It's defintely a process but luckily the few friends and family members and of course my husband I've disclosed the news to have been supportive.

That's all that matters because, in the end, it's just hair. Best wishes.

 

[PlasmaBomb]

Gail Porter?

Before

After

 

[So]

It's not cancer, it's not heart disease, it's not organ failure. Hell, it's not blindness. Even worst case, while it will suck, you'll live, and most people probably won't even realize you have it. I know it sounds cold, but if this is the worst thing that ever happens to you, you've a very lucky lady.

 

[Q]

Originally posted by: So
It's not cancer, it's not heart disease, it's not organ failure. Hell, it's not blindness. Even worst case, while it will suck, you'll live, and most people probably won't even realize you have it. I know it sounds cold, but if this is the worst thing that ever happens to you, you've a very lucky lady.

I agree -- Mrs. Bugi, while I admit it would certainly not be fun, don't get too stressed out over this. Even if it gets really bad, wigs (at least for women, lol at some men wigs) looks 100% real to me. I would not be weirded out, or think any differently of a woman who has one or not. It's not deadly, unhealthy, or anything.

You'll be OK, hang in there!

 

[slayer202]

that's rough for a woman. would be much easier for a man

CV

 

[MrsBugi]

Originally posted by: Blieb
Sorry ... can't really put myself in those shoes, I should be in the laser hair removal line (if not just for my back).

We had a family friend who has totalis. Haven't seen them in maybe 15 years ...

It was a male ... he had a wig and as a kid I never really noticed.

On a woman who has a wig, the only telltale would be eyebrows. Some people butcher them anyways and just pencil them in.

I think you should look at it more as liberation ...

- Never have to shave your legs
- Never have to bikini wax
- Never have to pluck eyebrows
- Never have to pay big bucks for salon highlights and trims
- Never have to worry about that upper lip mustache

I'll trade you my hairlessness for your hair as long as it's concentrated on my head! My husband actually has a very hairy back as well and a full head of hair so hopefully our future kids will inherit his hair genes.

May I ask the age of your family friend with totalis? If I progress to totalis I can pencil my eyebrows in, they're thin right now but still there. I really like and appreciate your reframe, I know there are positives but they're kinda hard to celebrate right. In due time I'm sure...

 

[oiprocs]

Better than cancer.

I know that's not very comforting, but things could be worse. This is something I would wish upon the most vain individuals, so they can see that real beauty lies on the inside.

 

[MrsBugi]

Originally posted by: MagnusTheBrewer

Originally posted by: MrsBugi

Originally posted by: ja1484
Had a friend with it back during my childhood.

For my part, I wouldn't have a particular problem with someone not having a typical head of hair. I understand I might be different from the norm though.

PM to talk? Perhaps try out the ole shaved head look or become a hat aficionado?

If and when the time comes and Toppik (which I have been using to cover scalp patches so far) no longer works, I will shave my head and start wig shopping. Thank you for the support, did your friend's condition improve and if so what did he/she do? I'm still in the denial phase somewhat, I'm hoping there will be some magical cure (my mom insists I rub the bald patches with ginger soaked in brandy) but deep down I know there isn't.

It's really good to hear that you wouldn't have a particular problem with someone not having a "typical" head of hair. I think the social stigma is much more against women with baldness though, with men it's much more understood and accepted. It's defintely a process but luckily the few friends and family members and of course my husband I've disclosed the news to have been supportive.

That's all that matters because, in the end, it's just hair. Best wishes.

The love and support of friends and family is definitely what's most important. I have to say that it's very hard to get up in the morning and go to work/out in public surrounded by so many people who don't understand or who aren't as sensitive as loved ones though. I've become a bit more of a social recluse since I've been losing the hair, soon it may be time for a high-quality wig which should give me some confidence back. Thank you for the kind words I appreciate them.

 

[narzy]

I can really understand how that news is shocking to you. My mother lost all of her hair when she was doing chemo for her breast cancer. It was difficult for her too at first but she actually embraced it. After a while she appreciated how easy it was to keep her 'hair' and how much easier it was to wash her head.

I have a great picture of her with the blueman group in vegas with a big blue kiss on her bald head. (no you can't see it)...So while it is shocking, and all sorts of bad right now, you may learn to see a brighter side.

:wine:

Also, she found tubins much more enjoyable than wigs. I don't know but you might be able to pull off that look as well.

Oh yeah, and take a deep breath, you seem to need one...

 

[MrsBugi]

Originally posted by: PlasmaBomb
Gail Porter?

Before

After

I hadn't heard of her until now, just did a google search and it sounds like she has a documentary "Gail Porter Laid Bare." I'd love to see it and will do some research.

Trailer for a new film about alopecia, one I am very much looking forward to seeing as it features an amazing, beautiful, strong and courageous friend of mine who I did not know had alopecia as well until I told her about my diagnosis

 

[MrsBugi]

Originally posted by: scorpious
Better than cancer.

I know that's not very comforting, but things could be worse. This is something I would wish upon the most vain individuals, so they can see that real beauty lies on the inside.

Originally posted by: So
It's not cancer, it's not heart disease, it's not organ failure. Hell, it's not blindness. Even worst case, while it will suck, you'll live, and most people probably won't even realize you have it. I know it sounds cold, but if this is the worst thing that ever happens to you, you've a very lucky lady.

So and scorpious, logically I know that you are both right, I guess I'm stuck in an emotional ball of what comes down to basic vanity right now. Real beauty is truly on the inside but most people are very quick to judge from what they see immediately on the outside.

So, if this is the worst thing that happens to me I will definitely consider myself lucky. Cancer runs in my family (grandmother died of ovarian cancer, mother had hysterctomy due to uterine cancer) so if I dodge that bullet I will be very grateful.

 

[MrsBugi]

Originally posted by: slayer202
that's rough for a woman. would be much easier for a man

CV

Agreed. Ever since the doctor's diagnosis I've been hyperaware of the hair on everyone's heads. So many men with bald patches or thinning hair and people don't think twice about it. A womanwith bald patches or thinning hair and there are often exchanged looks, looks of disgust, or a much more insensitive reaction.

 

[MrsBugi]

Originally posted by: Quintox

Originally posted by: So
It's not cancer, it's not heart disease, it's not organ failure. Hell, it's not blindness. Even worst case, while it will suck, you'll live, and most people probably won't even realize you have it. I know it sounds cold, but if this is the worst thing that ever happens to you, you've a very lucky lady.

I agree -- Mrs. Bugi, while I admit it would certainly not be fun, don't get too stressed out over this. Even if it gets really bad, wigs (at least for women, lol at some men wigs) looks 100% real to me. I would not be weirded out, or think any differently of a woman who has one or not. It's not deadly, unhealthy, or anything.

You'll be OK, hang in there!

You and many others in this thread are truly wonderful people. Thanks for the encouragement, I know that stress can exacerbate the situation so I'll try to stay positive about it. My friend who is working on the documentary link that I posted has been wearing a wig for 2 years and I just recently found out about it when she disclosed it to me after I told her about my condition. I'd always admired her beautiful hair which, it turns out, was a wig. She is an amazing, beautiful person both inside and out, with or without hair. We both have our hard days and she is an inspiration to me.

 

[KeithTalent]

Originally posted by: So
It's not cancer, it's not heart disease, it's not organ failure. Hell, it's not blindness. Even worst case, while it will suck, you'll live, and most people probably won't even realize you have it. I know it sounds cold, but if this is the worst thing that ever happens to you, you've a very lucky lady.

Easy to say as a man, for a woman I would imagine it's about 1 milion times more difficult. From my experience with girlfriends/wife, no matter what we say or think, a woman's hair is something they are always thinking and concerned about; heck one of my old girlfriends got a bad haircut (in her eyes, it seemed fine to me) and she would not leave the house for days and was crying all the time. Total nightmare.

Sorry to hear MrsBugi, but it sounds as if you at least have a great support system in place. Good luck.

KT

 

[narzy]

Originally posted by: MrsBugi


but most people are very quick to judge from what they see immediately on the outside.

I think you might underestimate most people.

Or just wear a big button that says "Alopecia Sucks...Donate to Research" with an arrow pointing up. Then they know exactly what's up and can understand.

 

[MrsBugi]

Originally posted by: narzy
I can really understand how that news is shocking to you. My mother lost all of her hair when she was doing chemo for her breast cancer. It was difficult for her too at first but she actually embraced it. After a while she appreciated how easy it was to keep her 'hair' and how much easier it was to wash her head.

I have a great picture of her with the blueman group in vegas with a big blue kiss on her bald head. (no you can't see it)...So while it is shocking, and all sorts of bad right now, you may learn to see a brighter side.

:wine:

Also, she found tubins much more enjoyable than wigs. I don't know but you might be able to pull off that look as well.

Oh yeah, and take a deep breath, you seem to need one...

Your mother sounds like such a strong woman, wow. That picture sounds so sweet and there is definitely a lighter side to such a seemingly dire situation. How is she doing now? It sounds like she has developed a very positive attitude towards it and I really hope I'll be able to do the same sooner rather than later. Thanks forthe tubin suggestion, I'll do some more research on that option for myself. Thank you for the deep breath reminder, lately I've been forgetting.

 

[narzy]

Originally posted by: MrsBugi

Originally posted by: narzy
I can really understand how that news is shocking to you. My mother lost all of her hair when she was doing chemo for her breast cancer. It was difficult for her too at first but she actually embraced it. After a while she appreciated how easy it was to keep her 'hair' and how much easier it was to wash her head.

I have a great picture of her with the blueman group in vegas with a big blue kiss on her bald head. (no you can't see it)...So while it is shocking, and all sorts of bad right now, you may learn to see a brighter side.

:wine:

Also, she found tubins much more enjoyable than wigs. I don't know but you might be able to pull off that look as well.

Oh yeah, and take a deep breath, you seem to need one...

Your mother sounds like such a strong woman, wow. That picture sounds so sweet and there is definitely a lighter side to such a seemingly dire situation. How is she doing now? It sounds like she has developed a very positive attitude towards it and I really hope I'll be able to do the same sooner rather than later. Thanks forthe tubin suggestion, I'll do some more research on that option for myself. Thank you for the deep breath reminder, lately I've been forgetting.

She is doing really well, cancer free so far and I hope to let it stay that way for a very long time. But she is a VERY strong woman...she had to raise me...

 

[MrsBugi]

Originally posted by: KeithTalent

Originally posted by: So
It's not cancer, it's not heart disease, it's not organ failure. Hell, it's not blindness. Even worst case, while it will suck, you'll live, and most people probably won't even realize you have it. I know it sounds cold, but if this is the worst thing that ever happens to you, you've a very lucky lady.

Easy to say as a man, for a woman I would imagine it's about 1 milion times more difficult. From my experience with girlfriends/wife, no matter what we say or think, a woman's hair is something they are always thinking and concerned about; heck one of my old girlfriends got a bad haircut (in her eyes, it seemed fine to me) and she would not leave the house for days and was crying all the time. Total nightmare.

Sorry to hear MrsBugi, but it sounds as if you at least have a great support system in place. Good luck.

KT

Your empathy is much appreciated KT, you called it spot-on. I've cried about a bad haircut (perm that looked like a trapezoid on my head ) in the past and now I wish I had enough hair for a bad haircut period. Logically I understand that this is not the worst thing that could happen but as a female who is "supposed" to have "fertile/feminine features" like curves, thick hair, etc. it's tough knowing that there's nothing I can do to have natural hair covering my head and it can be a downer sometimes especially when I look in the mirror and see patches of bald, bare scalp where there used to be hair.

I am very fortunate and grateful to have a wonderful support system, friends and family and apparently some very kind and understanding souls here at AT. Thank you for the luck, much appreciated.

 

[MrsBugi]

Originally posted by: narzy

Originally posted by: MrsBugi


but most people are very quick to judge from what they see immediately on the outside.

I think you might underestimate most people.

Or just wear a big button that says "Alopecia Sucks...Donate to Research" with an arrow pointing up. Then they know exactly what's up and can understand.

I hope I do. It makes it a little harder living in LA with so many "pretty people" and such a superficial culture in many circles... in a few years when we have children we are definitely going to move, either back to the East coast or possibly somewhere like Colorado.

Love the button idea